Doreen Cummings is the Director of Services for Mainstay Supportive Housing. This series explores different topics related to finding the right supportive housing for your loved one with intellectual or developmental disabilities. This interview has been edited for length and clarity.
We’re talking about that age of 22. We hear so much of it when talking about young adults and people with intellectual and developmental disabilities. Why is that age so important?
The biggest reason why it’s so important here in Massachusetts is because at age 22 your education entitlement ends, on the day of your 22nd birthday. That’s a big deal. You’ve been in the school system for all those years, 0 to 22, and now it’s sort of entering adult life, no entitlement, and it feels a little bit like you’re falling off a cliff, the fight has started. You know, it’s this big wide world of adulthood that you’re now navigating. So, I feel like folks are really nervous when that turning 22 years is approaching.
I do feel though that, although that’s a really important milestone, that it’s a little bit misleading because you’ve got so many things that are happening before 22 in your adulthood. So, 22 is, yes, the day that you’ll be graduating from your high school program and then maybe going into an adult services program like DDS day programming, Mass Rehab Commission, Department of Mental Health, where they’ll take over your case, in most cases. But turning 18 is when you’re becoming an adult, and there’s lots of things that people need to be doing, that the school systems miss, by no fault of their own. It’s just not their focus. The school’s not really focusing on all of these applications that really should be starting at 18. So that’s the biggest thing.
Here’s a quick checklist of the applications. It’s your Section 8 application. It’s your adult services application, whether that’s Mass Rehab, DDS, or MRC. It’s your RIDE application for the transportation, the MBTA RIDE. You’re eligible at 18.
Social Security is a huge one that folks really should be doing right at 18, applying for Mass Health and the services under Mass Health, particularly the adult family care program. So those would be my quick checklist of the ‘Turning 18’ things that you can really be doing during those four last years of school. And then, those four years, you’re generating four years of cash for your loved one, either you’re banking it away, you’re paying the bills to have them living with you. But say, for example, the Section 8 housing list, there’s these four years that you’re really not thinking of moving your kid out at that age, but they’re four dormant years of waiting, and then you’re only waiting for six years or so.
You mentioned graduating at 18 and some schools do give students with disabilities that option instead of staying until 22. Do you have some general advice as far as that’s concerned?
My general advice is to be cautious. If something goes wrong between 18 and 22, in some cases it’s appropriate, without a doubt. In most cases, I’m talking to a family about why they made that decision, what their plan is if something goes wrong? Can they go back to the school and undo it, so that they get some types of services before 22? I definitely feel like holding on to those services as long as possible is really important. Because DDS services generally start at 22, although 18 is definitely the marker there, you can tap into the DDS services in some ways. But the school system is supposed to be providing a tailored plan for the student until they turn 22, whether that’s helping them in a job situation, with the ADLs back at the classroom, academics, whatever that is. I do find that a little worrisome when I hear that the student is not 22 yet, but they’ve accepted that diploma and graduated.
You talked about upwards of 10 years waiting for a Section 8 housing voucher, on a wait list. What about other programs that are out there for your child – Social Security, DDS services. Do they all have those same kinds of wait lists and requirements?
Social Security does not typically have a wait list. There’s a process you have to go through and paperwork, things you have to gather, and documents. That is the bulk of it. And then there’s some maintenance too. If you have a person who’s working, you want to make sure, ‘Are we going to just let them work as much as they want? Are we going to balance it so it doesn’t impact their Social Security?’ You don’t want to get into a situation where you have to pay back the government which, you know, whether it’s their fault or your fault, you’re still going to have to pay them back. So, you want to be a little cautious about that. But for most of the folks in our programs, while these guys are still in school, it’s just a check. There’s no waitlist there.
The RIDE, certainly there’s no waitlist there, either. Again, a process to apply and an interview process to get into that, for sure. For
DDS, you’re looking at DDS eligibility at 18. They’re not going to do much for our folks until they’re 22. That’s generally how that works. I will say something unique, recently because of Covid and the staffing crisis, there is a waitlist for day programs. One thing I see DDS giving the most of is a nice hearty day program five days a week, usually six to seven hours a day, like from 9 to 3, with transportation on either end. Coming from a school system, that’s usually what they’re giving. With the waitlist, that’s been really challenging for folks with day programs, they just can’t get into those day programs to kind of keep that continuing care going. So that’s been difficult.
As far as Mass Health, there shouldn’t be a waitlist there, either. And generally, when you get Social Security, you’re automatically qualified for Mass Health. But it’s essentially vouchers.
What about talking to your child about the changes that happen at 22, and the differences that they can expect? When do you recommend that those conversations start happening?
The earlier, the better. I really feel like the families that do the very best are the ones that are very transparent about the disability. You know, we all have some sort of disability. I think that the ones that do the best with their own personal disabilities are the ones that are transparent about them, get help for them, show some vulnerability around it and aren’t worried about it, hiding it, or pretending. Those families really struggle the most, when they get to a point where they realize that their loved one isn’t going to necessarily function in the same way as their dreams. It’s a hard pill to swallow. It’s really difficult for families. And a lot of times, the parents have really built up their child to think that they don’t have a disability or don’t have any needs or aren’t like ‘those people.’ And so, these types of situations are challenging, for them to wrap their head around and adjust to. Those are the toughest situations.
I feel like autism is a superpower. I can name any disability and name a superpower that kind of comes with it. So, I do think that embracing your disability, showing the superpowers of it, and how that kind of impacts and shapes your life is the healthiest way to go about it.
Certainly, the changes from school to adulthood and what that service system looks like, talking about that when your kids really have an understanding of what it’s going to look like. Those teenage years – 16, 17, 18 – That’s when I would explain that and advise.
To learn more, please visit our website, or contact Doreen directly at Doreen.Cummings@mainstayliving.org.
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